MY TEN-YEAR-OLD DAUGHTER TRIED TO WARN ME, BUT NOTHING PREPARED ME FOR MY DIAGNOSIS
I crept back into the house, the bitter taste of cigarette smoke lingering in my mouth. My ten-year-old daughter stood barefoot in her white nightgown, brandishing a handful of kitchen knives.
"If you want to kill yourself," she said, her small face contorted, "why don't you just use these?"
Pummeled by images of blackened lungs in what, at the time, was her fifth-grade health class, my daughter had been hounding me for months. Her campaign maneuvers included weeping, pleading, and breaking my cigarettes in two. I knew she was right. I had promised to try—a promise I broke when I slipped into the garden thinking she was asleep. A promise I broke because nicotine had rewired my brain, shut down vital neurotransmitters, and created a dependency on cigarettes for a dopamine hit.
When I set out to write a medical memoir chronicling my seven-year battle with lung cancer, I wanted to provide a road map and reassurance for fellow sufferers, whether at the moment of diagnosis or while undergoing treatment. I wanted to encourage others to find a purpose to bolster their resilience. I wanted to offer hope. I soon realized that I would have to include the whole truth if I hoped to save anyone other than myself.
My three primary cancers were very likely the result of a thirty-year history of cigarette smoking. Even if I can trace the antecedents of my nicotine addiction—the highly persuasive tactics of tobacco companies and their advertising agencies, my need for acceptance, and my brain's bias to dependency—I cannot write out the smoking link. What is the source of my reluctance to include the information? Stigma. Or, more precisely, my fear of being stigmatized for having been a smoker.
It turns out I am not alone in the fear of stigma. I was saddened to learn that stigma may be preventing millions of smokers and ex-smokers from seeking early-detection screening for lung cancer. But while my penalty might be the lash of disdain, it could be an unnecessary death sentence for millions of others.
There have been extraordinary developments in lung cancer treatment in the past ten years. These include significantly less invasive 'keyhole' surgical techniques, targeted radiation therapies, and increasingly sensitive detection systems.
Early detection sounds less newsworthy than treatment advances but may be more important as early-stage lung cancer—Stage I—is typically symptomless—there are no nerve endings in the lungs. By the time symptoms manifest, cancer may have spread to other organs in a process known as metastasis. Treatment then becomes much more difficult, and survival rates plummet. The prognosis at Stage I is a five-year survivability rate of sixty-four percent, at Stage IV this drops to less than eight percent.
The American Lung Association estimates there are 14.2 million patients who meet the guidelines for early detection screening. Harold Wimmer, National President and CEO of the American Lung Association, states, "Lung cancer screening is the most immediate opportunity we have to save lives."
Medicaid and most private insurance plans cover screening in 46 states. And yet, screening uptake rates remain unfathomably low–under 6 percent in 2022.
Medical researchers hypothesize the reasons for screening's limited uptake are lack of awareness, lack of access, cost—and stigma. Dr Fintelmann, a radiation oncologist and associate professor at Harvard Medical School, struggles to understand the phenomena behind low uptake.
"Maybe some patients think lung cancer is their fault, and that's why they're not supposed to seek care," he says. "They may be embarrassed."
Most smokers and ex-smokers who are now aged fifty or older undoubtedly took up the habit in the 1970s and 80s when it was socially acceptable, encouraged by the media, practiced by authority figures, and common among their peers. At that time, smoking was permitted nearly everywhere: smokers could light up at work, in hospitals, in school buildings, in bars, in restaurants, and even on buses, trains, and planes. It would not be until the late 90s and early 2000s that governments would start to enforce bans on smoking in public spaces and workspaces.
None of this history is intended to excuse a harmful habit, but to put it in context. It was not so long ago that cancer of any type was a source of stigma. It remains one of the most feared forms of disease.
Stigma is deeply rooted in culture. The sociologist Erving Goffman describes it as the 'situation of the individual who is disqualified from full social acceptance'. He points out that shifts may occur over time in the activities, behaviours, and conditions a social group may accept or disdain. In my parents' day, smokers were just people who smoked, while divorced individuals faced heavy stigma.
In 2023, The Global Lung Cancer Coalition completed a multi-national study to measure current attitudes toward lung cancer. Forty-four percent of American respondents agreed with the statement: I have less sympathy for people with lung cancer than for other types of cancer.
Smokers are only one of many groups affected today by stigma related to personal behaviour. Patients struggling with the health impacts of obesity, sedentary lifestyles, or unsafe sex have also felt its lash. For many people, it seems easier to empathize with someone who is ill through no apparent fault of their own.
However, all afflicted individuals need our compassion and support to make the lifestyle changes or treatment choices necessary to alter their health outcomes. Unfortunately, it is too late to roll back the lifestyle clock for past smokers. The window of prevention for us has closed. Instead, the window for early detection has opened.
How do we reach smokers who may resist screening due to stigma? Who might be the influencers who can persuade current and former smokers now aged fifty years and older to undergo screening? It may be time to turn to our children once again. Tobacco education was in full force in elementary schools in the 1990s when both my daughters launched Mom Stop Smoking or You Will Die campaigns. At that time, the power imbalance of parent and addiction far outweighed their tear-stained entreaties. Fast forward twenty years, and I had finally managed to quit smoking, but the damage was already done—the seeds of lung cancer already sown.
Early detection screening was a decade away, but I got lucky when a test for another medical condition flagged an issue that sent me to a lung specialist. I didn't feel lucky when I received my first cancer diagnosis. I felt terrified. It wasn't until after the third tumour was found and treated that I realized just how lucky I am. All my cancers have been found at Stage I and eradicated.
Had screening been available when I first met the criteria for early detection programs—fifty years old and a twenty-year history of smoking—I know my children, who by then were in their twenties, could have convinced me to get scanned. Especially once they reminded me of all the milestones and moments of their lives that they needed me present to share with them–graduations, weddings, and grandbabies. I know this because when we all thought I would die from the first cancer, my daughter asked me to write her a series of letters that she could open on each of those future occasions. Instead, I got to witness them.
The new campaign might be #Mom, Get Scanned Because I'm Not Ready To Lose You Yet. #Mom, I Love You. It's worth a try.
Jan Pezarro is a Vancouver-based writer and award-winning marketer who is currently writing a true crime memoir about Mad Men and lung cancer. She recently completed an MFA in Creative Nonfiction at the University of King's College.
All views expressed are the author's own.
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